Saturday, November 18, 2017

Time to Say Goodbye

Good evening.

I started this blog about two years ago.  While my ultimate goal was to be a voice for other special needs parents, there is no question that it was a therapeutic exercise for me.  Writing here has been a way for me to process my feelings and make some form of sense out of them.  I always say that I hope that I reach at least ONE PERSON and make their lives better.  In actuality, I have reached my own self and have become stronger.

In this two year period the blog has reached 54,000 people.  I would have been excited to think I reached 540 people!  The truth is, I have no way of telling if any of those 54,000 people found some sort of solace in what I wrote.  I want to believe that there were caregivers out there nodding their head and feeling like my words spoke for them.

If anyone is reading this right now and thinking that anything I said made their path in the least bit easier, I want to thank you.  I'm incredibly humbled by every person that sent a note of support throughout this journey.  The most frequent comment that I have heard is that my posts made them cry.  I've never found this easy to reply to.  I'm sorry?  Thank you??  I try to think about it as I've raised someone's sensibility toward people that are affected by the spectrum.

I feel as though the blog has been successful in that it has given Tyler a voice which reaches people around the world.  I have had views from all over the globe.  There are folks from Russia, France, Hong Kong, China, Germany, Austria, Brazil, and all points in between that have followed the blog.  To think that my boy has reached people all over the globe is incredible.  I believe that he has changed peoples lives.

Unfortunately, I feel as though I have reached a creative conclusion of the blog.  For the past few months I have struggled to keep the message going.  To continue to try and carry on would be wrong if that is where I am at.  I am currently writing for a national website, a magazine, and working on a book.  My wish is that these projects are part of an even larger calling to reach an even larger audience.

I want to thank Tyler for being the inspiration behind every single letter that I type.  He is the light of my life and I could not be more proud of being his Dad.  I also want to thank the amazing people that have been in our lives for so many years.  Tyler's Great-Grandparents, Grandparents, The Yinger Family, Alison, Miss Sue, the staff of TLC, Red Lion Zion Church, Shadowfax, the Sherman Oaks Hood, and so many others that deserve more credit than I could ever give them.  Tyler's Great-Grandfather John who we lost earlier this year: you were an incredible force in all of our lives and we love and miss you more than you could ever know.

My final word is this: be a changing force in someone's life.  No matter what you face in your life, do it with grace.  Turn your experiences into the beacon for someone else to follow.  Love one another.  Be an amazing force for good.

Be well and God bless.    Tom

Tuesday, November 7, 2017

Autistic Kids Rock!

It is always an honor to talk about pages, blogs, and every other effort that people make to support one another who are caring for people on the spectrum.  We need each other.  And in this day of social media, there are many ways that we can get the message out.  

I am always posting messages which reflect the fact that YOU ARE NOT ALONE.  No matter what you are going through, there is someone out there to help you through it.

Please visit the Facebook Page "Autistic Kids Rock" and join the conversations.  You can copy and paste the link below.....

As caregivers, we have to fight for our loved ones every single day.  There is no way that we can survive without support from each other.  PLEASE connect with someone, somewhere.  It doesn't have to be my page, or Autistic Kids Rock, or anyone else I can recommend.  Find someone that speaks to your situation and become part of their community.  Or, better still, find it within you to start your own community.  

There are 250 wonderful caregivers on "Autistic Kids Rock" waiting to welcome new members with open arms.  

Be well and God Bless.


Thursday, November 2, 2017

2 Years

We are quickly coming up on the 2-year anniversary of Tyler's transition into his residential home.  It absolutely blows my mind to think of everything that has changed in this 24-month period.  

I've learned that Tyler can indeed be a strong adult, regardless of my preconceived notions and ideas.  I learned that it was my own fear that was helping to hold him back from being everything he could be.  The comfort level that I was supposedly providing him was really the comfort level that I needed for myself.  But I couldn't see any of these things in the correct context until I stepped away from the eye of the storm.  It's amazing what can happen when you have the ability to step back and see things from a different vantage point.

When Tyler first moved into his new home, he struggled quite a bit.  He was used to having everything done for him almost entirely.  We had stopped trying to challenge his boundaries which caused him to rely on the comfort of our complacency.  Now we were asking him to throw all of that comfort away in one day.  It was quite a shock to his system.  Fortunately he found people that he liked.  He learned that his new home was safe, and dependable.  He found his inner strength.

Over the last two years we have continued to expand his boundaries.  He started going to our church.  He changed classroom instructors at his day program.  He has adjusted to us as "visitors" to his home rather than his primary caregivers.  Its not been overnight, and its not been a miracle cure.  He still has days where pushing his buttons is just a bad idea.  He still struggles with new situations.  BUT there have been a few tremendous breakthrough moments too.  He is tolerating blood tests and dental appointments better than he ever has!

The 2 years has also been a learning experience for me too.  I learned that caregiving had been the most rewarding thing I had ever done, while at the same time being the most damaging.  It wasn't something that I could switch off, but rather it was more of a tide that had to slowly recede.  It was like a light being turned on at the bar at 2am where you suddenly see how ugly the environment and people are around you.  It was much harder that I had ever imagined.

So here we are 2 years later.  Tyler continues to be happy with his staff and surroundings.  He is doing well in his day program, and getting the occasional trip to a restaurant, church, bowling, and other things that are happening around town.  Most importantly he is getting to hang with a roommate and staff that he likes and trusts.  He feels safe, secure, and I know we are all watching over him.

As for me, I've been able to adjust.  There are times that I miss having him so close to me, but I also understand that I wasn't helping him anymore.  Now that I am away from the eye of the autism storm, I could never survive again in that role.  I still love him with every fiber in my body, and I will always look out for him in whatever role I have in his life.  But I know that chapter in our lives is behind us.

I just hope someday we will be in a place where we can talk about all of these things.  So I can explain to him how much we love him and that everything we did was out of love for him. 

Monday, October 2, 2017

Vegas Tragedy

It is sadly ironic that I wrote an entry last night about how difficult life is in today's world.  I woke up this morning to the news that many, many innocent lives were torn apart by a single gunman.

I have a 26-year-old and an 8-year-old that love people, and they both display empathy toward their fellow man.  Thankfully Tyler will never have to see the kind of news that unfolded today.  As for my daughter, we are left to figure out how to explain something so evil. 

Being Tyler's caregiver made me very sensitive to things going on around me.  I still fight for others to treat him with compassion and respect.  I also spent 25 years making sure that we protected everyone around us from experiencing his aggression and outbursts.  It was a quarter of a century mission to make sure everyone was well taken care of.

Then we see the events of the last 24 hours.  I do not understand the way people treat each other.  It breaks my heart to think of the anguish being felt by so many people tonight.  And for what?  

Somehow we have to get the message: we are all we've got.  We have to take care of those in Texas, and Florida, and Puerto Rico.  They are our brothers and sisters regardless of the language they speak or the color of their skin.  We have to take care of our sick and our disabled.  We need to respect and care for our elderly so that their years of life do not end in loneliness and poverty.  We must teach our children to care about each other and to strive to improve a world which we have foolishly wasted away.  

Tonight I pray for those lost to such a senseless act.  I pray for those families and friends who lost loved ones.  I pray for our nation that we step back and look at ourselves.  We have to stop the stupidity and realize that we are killing each other, and our planet.  We are not leaving a world to be proud of for our children. 

We have to dig deep and find the courage and faith to continue on.  We must help each other and watch over each other if we are ever going to conquer evil.  Most of all we have to BE THERE for each other.  If you see someone hurting....reach out to them.  If someone seems to feel to them.  

Tonight, like too many other nights, we mourn and we move on faithfully.

Be well and God bless.    Tom

Sunday, October 1, 2017

Fear Itself

John Kennedy famously said:  The only thing we have to fear is fear itself.

How many times have all of us been afraid of something and found that our greatest fears did not live up to reality.  It's those moments where we reflect and say "that wasn't as bad as I thought!".  We almost feel silly for worrying so much.

As caregivers we have likely come by our fears for good reason.  We have likely experienced heartache beyond what most people can fathom.  With Tyler I came to expect that bad things would happen.  So many endless nights sleeping beside him in the hospital will wreck you as a person.  My fear became waiting for the next shoe to drop.

Unfortunately fear perpetuates itself.  It feeds off of itself.  It becomes its own self-fulfilling prophesy.  It tells you to give up before you have a chance to lose!  It makes you look only at the worst-case-scenario

So what does JFK mean by this statement?  We cannot live in fear.  Regardless of what our situation is...we cannot live in fear.  Our minds enjoy tricking us by making us believe that everything will crash and burn.  I was afraid that Tyler would break down if we were not taking care of him, yet he has survived and thrived.  I was afraid that by leaving my job of 13 years I would lose everything, yet a month later I realize I am not only ok, but doing much better.

Why do we do this?  My opinion is that we are conditioned as consumers to protect against the unseen bad thing.  Think about it, we are surrounded by ads that show us how awful it would be to be bald, or impotent, or have eyelid pain.  We think we either are already a victim of these things, or we surely will be.

Have you ever had one of those maddening friends that always seem to survive everything?  No matter what risk they take they come out just fine.  These people drive me crazy!!  Its like they have teflon clothing and can walk through fire and not get burned.  But why can they do this?

I believe the answer is that we can either choose to live in fear, or choose to live without it.  Rod Stewart sings "Luck is believing that you are lucky.  That's all.  And showing just a little bit of faith".  Just as fear feeds off of itself, so must feeling confident.  

Being a caregiver is extremely difficult.  But it will be difficult regardless if we walk in fear or not.  So why can't we learn to walk with that teflon jacket too?  Things will still stick to us to be sure, but maybe we can win some of the smaller battles, which can only help in the long run.

Be well and God bless.    Tom